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Joint Pain
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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

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I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Join pain, definitely a problem. Hands and feet are the worst (sometimes I even avoid walking), then hips and occasionally a shoulder. No popping and only very mild swelling, though.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Lgood, Your not alone... I've suffered with shoulder, neck, arm, wrist, hand, knee, leg, foot, jaw and finger pain.... I've complained about finger pain for years... It felt like I had 10 thumbs instead of 2... I had a MRI of my shoulder and nothing stood out as a problem...My shoulder bothered me since I was in my 20s and that pain went down to 10% since going gluten-free.... I still have other issues that I'm dealing with, but life is much better then a year ago....
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I get migratory deep stinging pains in my joints, but also loose joints. My right knee is shot, sometimes I can hardly walk. Also I get a lot of joint grinding. At its worst, my joints would crack hundreds of times per day (no joke), along with muscle twitching all over

Gluten tests are tomorrow....so we will see if this is the reason why

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Thanks for the replies. I'm so uncomfortable- ugh.

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Last night got so bad, I thought I was going to end up going to the hospital. Today I'm back to normal. I VOW to be more diligent in reading labels!

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I experience joint pain mainly in my hip, knee, and shoulder. It hurts a lot worse after getting glutened. I also experience loud popping joints. I sound about 90 years old. I suffered terrible TMJ and even have a stupid $200 mouthguard for it but I've noticed now that when I go long stretches without being contaminated it goes away!

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Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

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Thank you for the information on silica. Over the past year and a half I have been trying all sorts of mainly physical means to relieve chronic right inner "chicken wing" pain in my right upper back (worse when glutened)- stretching, exercising, yoga, ice packs, massage, rolling on an egg shaped rock (very effective), a new bed and mattress, and ibuprofen, as well as other supplements, but never heard of slicia. Thanks again. :)

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I don't know if you'll see this, but could you tell me what is msm?

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I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

Your knee pain sounds kind of like mine. My left knee has been hurting for over a year now, and my right for over 6 months. I have tried everything for it and nothing has touched the pain, and I've seen many different doctors who've all eventually said that I shouldn't still be in pain, but they don't know how to help me so they've let me go. But I also different types of pain, in different locations, and at seemingly random times. I'm really hoping that going gluten-free will be the answer. I've only been off gluten for only 6 days, and so far I really haven't seen any improvement. I'm hoping maybe the knees will just take longer to see improvement, even though my stomach symptoms are already doing better.

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I don't know if you'll see this, but could you tell me what is msm?

MSM stands for methylsulfonymethane. It's reported to act as an anti-inflammatory, but its effectiveness is still debated. MSM is often added to those glucosamine and chondroitin joint supplements. Wiki has a pretty good summary if you're looking for more (I had to check it again; been a while since I've looked into that).

Are you looking into taking those supplements?

I tried Osteo Bi-Flex for about 2 months (January through Feb of this year before I went gluten-free). It didn't seem too effective on my chondromalacia and other patella symptoms and I ended up having more stomach pain from it. It aggravated the damage a month-long high-dose regimen of ibuprofen did to my stomach. However, I know a lot of people who swear by it. For the record, most of them are over 50 and I'm only 20 so it could have been a different problem.

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My doctor pushes fish oil. I do think my joints feel better from it. Could be the placebo effect. I don't have pain unless I actually get into gluten. Normal every day is fine.

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Wow, this all sounds a lot like fibromyalgia pain. Suppose it could all be related??? My general body aches and joint pain and brain fog are definitely less when I am vigilant about staying gluten free. I made a few more changes at home, including my own, labeled peanut butter jar and butter tub, which has helped.

Yolo, what brand of silica do you use? I'd like to try that. It would probably help with peeling, splitting fingernails too. There is an excellent discussion about nail problem on the board, too.

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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

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I think I'd like to try silica, as I have joint and back pain, too. I also have plantarfaciitis in both feet, and yesterday, after having been on my feet for a whopping couple of hours :rolleyes: , not only were my feet killing me but my hip, knee, and ankle joints were, as well. and the bones in my feet. Ugh. I try to stay away from drugs as much as I can, but last night before bed I gave in and took Tylenol.

Maybe silica would help. Btw, how much do you take, and how often? Do you just follow the directions on the bottle?

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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Yes, BIG TIME. Feet, hips, hands and lower back are particularly intense.

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Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

Bea, thank you!

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Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

Hi Beth and all,

I am glad my experience interests you. The following will I hope answer most of your questions.

Horsetail just might work--it does have tons of silica in it. I have no idea how much to take--so I suggest trying trial and error and see if its enough help\. I would stay away from oatstraw if it is related to the wheat family. Is it?? Or is it just coincidental about the name?

Silica drops are pretty natural however. The bottle says just take x no. of drops a day (it varies depending on the brand). I have been taking twice the recommended amount, i.e., I take the regular amount twice a day. Graeme just follows the directions and it seems to be working for him, so I may be overdoing it. I think I should drop the dosage down probably. I just was so anxious at first to have more minerals due to this problem having been so long term for me.

The msm I think is also important, at least for me. As is the E-zorb for the calcium (I get it from Elixer Industries out of L.A.--just Google it and you will find it with lots of info about it. The Chinese invented it some years ago due to 20% of their population having a real a problem with poor calcium absorption). I have noticed a real negative difference when I go off of it after a couple of weeks or so and just use the calcium citrate instead. Many folks with celiac do not need the E-zorb. I have had celiac my whole life however and was put back onto gluten when I was four years old -- so its a very long term situation I have been dealing with and no doubt I have some semi permanent scarring despite all the enzymes and fibronylitic agents I take like nattokinase.

Besides my bones, hair, nails, teeth and collagen having been negatively impacted, lack of sufficient minerals also seem to have been very hard on my nervous system. Now people remark how calm I am. If I get glutened however I often get migraines and can easily become very irritable and mentally confused and out of it.

I also seem to need to take magnesium citrate. I just use the powder from Now. Otherwise I still get constipated. It is also supposed to help with all kinds of enzymatic processes in the body and helps balance the calcium. Historically I have also been taking Concentrace Trace Mineral drops for some years to help with my electrolyte balance which otherwise is off and too low. I just ordered a new kind of trace minerals however online.

I also eat a lot of home made yogurt I ferment for 24 hours in order to get more calcium while avoiding the lactose which I still seem to be allergic to. In addition the casein in the yogurt is also great for repopulating good bacteria in the gut -- plus I was reading the casein (in the yogurt) helps with the body producing its own co-Q10 and thus mitochondrial energy production (assuming of course you are not allergic to the casein of course!). This is important particularly as one ages I have discovered.

As far as where I get a lot of my other supplements, I often order them through herbs-pro. The prices are often inexpensive compared to store bought at least, esp. if I make a largish order. I tend to favor NOW products due to them being mostly gluten free (gluten-free). Country Life is as I said good for the co-enzyme B's. They are also gluten-free. Can't say if you all can tolerate them but they are fine for both me and Graeme--and Graeme had trouble with many B vitamin brands. There is some soy Lecithin in them however which could be a problem for some. I couldn't handle the sorbitol that the sublingual B's usually have.

If you can't take B vitamins, I suggest you eat a lot of chicken liver or calves liver and have more fermented food if you can tolerate it. I hear home made sauerkraut is very healing and helpful. You can make a version that is just inoculated with yogurt or acidophilous. If you can tolerate braggs apple cider vinegar that may help too.

In addition, as far as all this goes (concerning fibromyalgia like symptoms), I find having freshly blended (made in my blender in other words) vegetables as a pick me up. I remember a biologist (who massively resurrected her health after being allergic to almost everything) say that taking fresh uncooked chlorophyll like that is like getting a blood transfusion. It helps regulate all kinds of systems as well as gives extra energy and cleanses the blood. Juicing is nice too, but the blended veggies also give us the roughage we need. I find blended vegies also helps me get over any CC problems from gluten I might have faster--along with the yogurt and things like bromelain/papain caps (or eat fresh pineapple and papaya) and detox tea (I have talked about detox tea endlessly elsewhere, just do a search on it here).

Hope all this helps. It amazes me how all this stuff I thought was just me and my own peculiarities are not actually that uncommon!

Bea

PS--Beth I am thinking of starting some kind of support group one of these days when I have a little more time. Maybe we should talk sometime? And yes I love herbs too. Couldn't do without them...

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Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

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Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

Beth,

I just looked up oatstraw and it is part of the oat plant. I personally wouldn't touch it. Years ago I tried using oats as a kind of sedative to help me sleep at night. After a few months of this I ended up getting the shakes as well as worsened health in general. Out of that experience I eventually figured out that I had celiac from reading the Merck Manual and then going off most gluten for three months (after which my fingernails and teeth got a little stronger--which I took as a sign I did probably have it), although I didn't realize the full extent of it. The shaking scared me.

Unfortunately Kaiser was of no help even though I told them my suspicions--even after I had a frozen shoulder etc. later on. 4 years ago or so my nerves were diagnosed by an alternative doctor (from blood lipid tests) as only having 50% of the usual thickness of the myelin sheath on them. Fortunately the co-enzyme B vitamins helped counteract some of the worst problems from that (racing heart etc.). But going off all trace glutens did most of the rest--though as said the extra minerals (and oils) were also really needed.

I have had to be a health sleuth--and have actually gotten pretty good at it. Its for this reason I want to become some kind of healer...which I am working on developing these days.

Bea

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

I don't have much joint pain from glutening, but my boss is so sensitive that he has had to call in sick a couple of times due to the joint pain and swelling after being glutened. The last time (that I know of) he had three bites of mole sauce at a Mexican restaurant, then someone told him the waiter had been wrong and they used flour not corn starch. He said he couldn't even get out of bed by the next morning. I guess his wife is even more sensitive than he and also gets severe joint pain. Gluten is an inflammatory agent, and RA doctors that are current on their journals and open to the idea of dietary agents affecting health often put their RA patients on a gluten, casein, nightshade, and sometimes soy free diet right out the gate. There are a couple people where I work who are on a similar diet and their arthritic pain has been eliminated in one case, and incredibly reduced in another.

* Edited for clarity.

Edited by Korwyn
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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Hi, Bea!

For ease of reference: Would you mind indulging an attention-challenged, brain-fogged "old lady" and list every supplement you speak of here, with the brand name next to it?

ABC Multi - Funforyou Labs

DEF Calcium - Horsepills, Inc.

Oh, that would be so very much appreciated. Please feel free to add any additional supplements you use that may not have been mentioned here. THANK YOU MY FRIEND!

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    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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